Check in From Dr.

Dr. Spaeth called the other night to visit about how Greyson is doing. She continues to be happy with his great recovery. She said we could start reducing the amount of ibuprofen he is getting but she thinks the sling and drain need to stay in/on until next week. We will talk with her again on Friday to share the drainage amounts and maybe set a day to get the stuff taken out. Dr. Jiang will be taking care of the post op stuff for Dr. Spaeth so we will travel to KC to see him. Hope you are all having a lovely Halloween and Fall.

Take Care,
Brooke

YIPEEEE - Home Again

We made it to Carthage last night around 6pm. How nice it was to walk into our own home and to be able to sleep in our own beds with our own pillows. Greyson is doing great and loving playing with all of his toys.

Since things are going so well we probably won't make any updates until we go to KC to get the drain out next week. Dr. Spaeth will touch base with us on Monday or Tuesday to check in and see how things are going.

I am trying to get my laptop up and running again and hopefully will get to post more pictures soon.

Take care,
Brooke, Michael, & Greyson

On the Road (finally)

Greyson saw Dr.Spaeth again today. She said his blood work was fine but since the drain was still going fairly strong she decided to leave it in and will have Dr. Jiang in KC take it out in the next week to two weeks. He will wear the sling for two more weeks while the muscles in shoulder heal. She gave us some supplies, prescriptions, and a hug and we were out the door. Some quick packing and cleaning of our room and we were on the road by 3pm heading to Louisville for the night. Hope to be home Wednesday sometime.

Thanks for all your support.
Brooke, Michael, & Greyson

Another Day

Greyson went to see Dr. Spaeth today. Both drains had been slowing down considerably since Friday but #2 (they are labeled), which is the one behind his peck muscle, decided to pick back up this morning. she decided to leave that one in to see what it does but took the other out. She had his blood checked (just a finger poke) and she will let us know his hemoglobin level when we see her tomorrow at noon. We will find out then what comes next... Could be sent home with drain, could hang around and have ultrasound to see what's going on, or could take the drain out and wait one more day to make sure all is well.

Greyson is active as ever and she thinks it could be just that movement has gotten things moving around. He is doing great with the sling and doesnt fight it at all. He has been falling down some mostly because he can't catch himself with both arms and he is going 90 to nothin. He does have a hard time getting up from the ground but he still thinks he can crawl into his stroller on his own. He still gets ibuprofen 4 times a day for inflammation but we don't feel like he is in pain.

We spent a good part of the day on Saturday window shopping and filled Sunday with a trip to COSI, the science museum. They had a Dora exhibit that encouraged kids to learn while being active. There is also a very nice play are for kids under 5 that had a very nice water table among tons of other things to climb on and play in. Most of the other exhibits we cool for Michael and I to see and he just hung out in the stroller for those.

Hope you saw the pictures I posted this weekend. Took me forever to figure out how to do that since my computer is still dead and it is hard to use the computers here at RMH since they are pretty locked down.

Will post again after the appointment tomorrow. I am heading downstairs to do some scrapbooking (a volunteer brought all there stuff for guests to use).
Brooke

Back at RMH

Greyson was discharged at noon today and we headed back to Ronald McDonald House to hang out for the rest of the day. We napped, played, did laundry, and enjoyed two meals here. We also walked a block down to the CVS to get some ibuprofen for Greyson. That and an antibiotic are all he is taking.
Tomorrow we may go to the Science Center and do a bit of shopping. Nothing major on our to-do list for the weekend. Greyson does need a few button down shirts since we can't put regular t-shirts on right now.

We are hanging out here until at least Tuesday morning. He has an appointment to get the two drain tubes out Monday at 2:30pm. Dr. Spaeth doesn't want us to leave before Tuesday morning to make sure everything is fine before getting on the road.

Thanks for everything. Enjoy your weekend.
Brooke, Michael, & Greyson

Thursday - 2 days after

I know, I know....there should have been an update before now but Greyson is doing so great that it turned back into a two man show. He is keeping us hopping and we are trying to find thing to keep him busy. We went on two walks (in stroller) and also went to the toddler playroom. We took him outside to enjoy the fresh air as well.

We knew he was getting back to himself when he was standing in his bed first thing this morning. He has been going strong since then running around the room, hiding in the curtain, and climbing around and over anything he can. He has already figured out how to work around one arm being tied down. Since the doctor had to detach 2 of his muscles to clean out all of the growth and then sewed them back in place he isn't allowed to raise his right arm. She feels like it should heal in a few weeks and then he will get to use it again. You are going to be amazed when you see what it all looks like.
Dr. Spaeth and her resident came in to change the dressings and make a new sling. She callsthe sling a pretzel and thinks I will be able to recreate it when we go home. I plan to take pictures and video as she does it next time for future reference. I hope to post some pictures tomorrow from the computer lab at RMH.

Dr. Spaeth plans to discharge him tomorrow. She may take drains out tomorrow or maybe next week. We will stay around either way until next week. She doesn't want to send him home too soon and then have there be problems. She also had us bring in the car seat to plan how we well cushion parts so the straps don't hurt him. His incision at his neck is going to be close to the straps as well as the shoulder incision. He doesn't act like anything hurts now. He hasn't had any morphine since Wednesday night at 8pm only Motrin. It's amazing how tuff he is. What we learned is that it is because he has no perceived perception of pain so his brain doesn't tell him he should hurt like we adults tend to do ;)
Michael and I are split again tonight and hopefully will each get a good nights sleep. Michael headed to Ronald McDonald before 10pm and that gave me some time to post this update. Today we each took advantage of Greyson's nap times taking turns on the couch but are still a bit tired. The room is so small that only the coach, crib and tray fit in the room. We even fold up the stroller to have more room. We saw pictures of the new hospital rooms; they are beautiful and big. We will be making sure to schedule future visits here after it opens.

Sleep well...I know we will ;)
Brooke

In A New Room

We are finally in a regular room. Greyson has been doing good all day but we had to wait for a room to open. He has been in some pain but his meds kick in quickly and don't zone him out. He is getting more active and has sat up a handful of times. He really likes to roll onto his stomach to sleep. He fights the sling a bit and wants to mess with the tubes and IV ports. He is finally free of his "tethers" so I am sure he will get more active by the minute.

We are very tired and are heading to bed early. I am going to Ronald McDonald to sleep since there is very little room here. They told us again about how nice the new hospital rooms are going to be when it opens in January. I am sure Michael and Greyson will be great without me.

Take care,
Brooke

Wednesday Morning

So, we didn't make it to a regular room last night after all :( We finally got back to see Greyson in recovery around 10:30 or 11:00pm and he was having some problems getting enough oxygen, he had a deep and raspy cough, and they were trying to get his pain evened out. He was VERY puffy from all of the fluids they had to give him and they also wanting to keep an eye on that.

Around 1am the Anesthesiologist made the call that he would have to go ahead and move to the PICU for the night so that he could get one on one care. We got him settled in and asleep by 2:30am and then got some sleep ourselves.

All of the doctors came in this morning and decided he is good to go to a regular floor room so now we are just waiting for a room to open. It is a busy place so we may be waiting a while. In the mean time he is drinking lots of juice and has eaten a little. He watched a little TV and has snuggled with us a bit.

Today I have taken advantage of The Blue Jackets Room (like the Ronald McDonald House Room in Children's Mercy in KC). This family hospitality room has a library/computer lab, sitting room with TV, kitchen, laundry, showers, treadmill, and complimentary chair massages. I headed down while Greyson was sleeping this morning and ran a bit, showered, and even signed up for a 15 minute massage (which was heaven). After all that sitting yesterday all three were great. Michael is going to get his massage tomorrow but I doubt he takes advantage of the treadmill ;)

As always thanks to all of you. And to Mrs. Irwin's class...I gave Greyson your message and he is on the mend.
Brooke

Finally Finished

13 hours later but all is well. The doctor said all of the nerves are working and she was able to get out almost all of the growth. It took a long time because the growth was intertwined with nerves, blood vessels, and muscles. He has two drains and a sling holding his arm down.

The incision follows his original surgery scar and goes up around his shoulder plus a small section by his neck. He is breathing on his own so will go to a regular room and will possibly stay until Friday then we will hang around to see Dr. Spaeth in clinic.

Glad to be done with this for sure. It's been a long day and we are anxious to see Greyson. Thanks for everything. We will share more in the morning.

Brooke & Michael

Another Update

Still in surgery... It's been 9 1/2 hours since we handed him
over. They have called a couple of times to let us know things are
still going well. Greyson did get a blood transfusion due to low
hemoglobin but they feel like he is doing good. The doctor was
still working on the chest wall and they expect to be done by 7pm.
FYI - it is 5:40pm now.

Brooke

Surgery Update

We have heard from the doctor a couple of times. Greyson is
doing well and all is going as planned. The doctor feels she might
get done earlier than originally estimated. We are patiently
waiting and keeping busy. It has been 6 hours since we handed him
over.

On a sad note my laptop has decided to quite working so I won't
be able to post any pictures :(

More updates to come.

Brooke & Michael

Surgery Has Started

We got here bright and early this morning. Greyson was sleepy but happy especially after they game him something to calm him down. He has started realizing that he may not like being messed with so the nurse that got to check his vitals found some bubbles and they did the trick. The drug kind of made him "drunk" which was pretty funny. At one point he was in the crib looking out at the nurses smiling and licking the bars.

The doctors came in to talk about everything and a nurse practitioner did a once over and said he was all good. She even checked Eli (the elephant) and my ears and he then seemed to be ok with her looking in his. He even showed her his tongue so she could take a look at his throat.

We handed him over at 8:10am and they called us right after 9am to let us know they had started surgery. It took them some time to get him set up for a long surgery (IV's etc) but they said that was normal and all was well.

Adrian is the waiting room hostess and she is that for sure. She knew even before we got here that we are going to be around all day. She made sure she knew where we were and that she had our cell number in case we leave.

We went down and ate breakfast a few minutes ago and are staying busy. We have good cell signals and are checking the CarePage and emails often. Thanks for the messages and so much more...

Brooke

Surgery in Morning

First, everything has gone great since they took out the drains Friday. The original "Buddy" site is quite swollen and red but he doesn't seem to care. We were finally able to give him a bath last night which he loved. The weekend with Adelaide, Jeremy, and Eleanna was wonderful. We went on a hayrack ride, ate, shopped, ran, and played at the park. We got back to Columbus this afternoon, checked into Ronald McDonald House, went geocaching, and had dinner out thanks to Chet & Charlie.

I am sure you all remember that surgery is tomorrow but thought we might give some additional details:
1. Surgery starts at 8am Eastern.
2. We should get updates from the doctor every 1-2 hours.
3. Surgery could last up to 10 hours.
4. Dr. Spaeth is going to be working in his shoulder/neck area, original chest site, and possibly in his arm depending on how things are connected.

We will put up a few posts tomorrow as we get information but will let you know for sure when all is done.

Thanks for all the support.
Brooke, Michael, & Greyson

Drain Free

First...there are new pictures. Sorry for the delay but we are keeping very busy.

We started the day today with visit to the Columbus Zoo and Aquarium. This zoo is associated with Jack Hanna and he often tapes his wildlife shows there. We really enjoyed the visit and only wish we had more time there. The coolest thing (besides the animals and their habitats) was that Michael had found 50% off coupons and Greyson was free...and did I mention the beautiful weather (sunny, no wind and 70-80's).

After the zoo we headed back to Nationwide Children's (yes that is Nationwide the insurance company). Greyson got his 3 drain tubes out today with no problems. Two of the three were basically not draining at all and the other wasn't draining much by today. The worst part about the whole process of having drain tubes removed is having to hold Greyson still, which he hates, and peeling the tape off.

After the hospital, we stopped by The Ronald McDonald House (RMH) and got a tour. We have decided to get a room there on Monday night and probably as long as we are here after surgery. The RMH here is across the street from the hospital and is practically brand new. They ask for a $20 donation per night and ask families to help with small chores like starting the dishwasher or take out the trash. It is a beautiful facility and we will share more when we check in.

We hope you all have a wonderful weekend. We will start updating on Tuesday.
Brooke, Michael, & Greyson

Getting Out Soon

We are close to being discharged...actually just waiting on Greyson to wake up from his morning nap.
He/We slept through the night and woke up bright and early (6:30am). He ate a great breakfast and has been VERY active. He got his IV out and other monitors off so he is mobile again. We took a trip to the kids play room for a while and wore him out. He loved all of the toys there and activities going on.

The OT department helped to get the velcro on his wrist brace fixed and Dr. Shiels has been in touch to give some guidance on how to tend to his drains (especially the one that won't hold suction which is not that big of a deal may just be messy). The nurse has fixed us up with lots of supplies to change the dressings, we have a script for an antibiotic.... and we think we are good to go.

I hope to have some time to put some pictures up later today or tonight. We may even see about taking Greyson to the zoo/aquarium later today to keep him entertained.

Thanks for everything.
Brooke, Michael, & Greyson

Out of Sclero and All is Well

Again, I have to tell you all how much we love Dr. Shiels....he is so positive about how he can help Greyson and knowledgeable about Lymphatic Malformations (LM). He gave us his pager number and told us to make sure and keep track of it so that we can contact him in the future.

He came out a few minutes ago and told us all about what he did. He drained and treated 6 cysts that were sort of inter-connected so there are only 3 drain tubes. He also drained a few others to help Dr. Spaeth's surgery next week.

We talked a lot about the life cycle of LM and how to respond when they "flare up". He shared his positive outlook about what he can do to help get rid of what is there and how he can work with plastic surgery in the future.

He said that Greyson shouldn't be in any pain but that they want to keep him overnight to make sure he gets 3 doses of antibiotics before we leave. Greyson will be on antibiotics orally after that. We will come back Friday afternoon for the drains to be taken out.

Take care,
Brooke & Michael

Meet & Greet and Prep

First off, we must say thanks to Matt, our cousin that lives in Louisville. He opened his new home to us and cooked us two wonderful meals. With many meals out in our future, home cooking was just what we needed. Also, thanks to Kelly Avise and family...they packed us a "travel bag" stuffed with snacks, drinks, and puzzle books to help with the trip. And of course to Aunt Bobbie and Slick & Sandy, our neighbors, for holding down the fort at home keeping an eye on things.

Greyson met both Dr. Shiels and Dr. Spaeth earlier today for short appointments to prepare for tomorrow's procedure. It was very close to lunch, and he was tired, but he did great. The hospital is huge, but we seemed to find the radiology and plastics departments fairly easily.

  First Dr. Shiels did an ultra sound to check out the area looking for large cysts he will be able to sclerosis to help Dr. Spaeth when she does surgery next week....That is the primary purpose in doing sclero this trip. He thinks that he found at least 6 larger cysts (1cm or bigger) that he can treat.

Treating them will make it easier for Dr. Spaeth to remove the tissue. In the future he will treat the smaller cysts and he thinks he can help take care of the 100's of very small cysts and the 1000's of tiny ones. Treating the smaller stuff will create scar tissue which would make surgery more difficult if he did that now.

We will arrive at 6am tomorrow for an 8am procedure. He will be put out for 1 1/2 hours and will probably have 6 drain tubes. The plan now is to keep him overnight to get antibiotics in him and make sure all is well.

Dr. Spaeth was pleased to meet Greyson and to see/hear that there have been improvements in his ability to use his wrist and hand. She watched Greyson and took some pictures, and we talked about the surgery that will take place next Tuesday. She is predicting that surgery will take up to10 hours but possibly not that long.... It really depends on what she runs into. She is going to work on the new growth in his shoulder (around the nerves) and the original growth site as well as maybe in the top of his arm.

.....there is your anatomy lesson for the day :) please ask if you ever have questions about what is going on. We have learned so much going through all of this with Greyson and learn more with every conversation. We really like these two new doctors and feel like we are in the right place.

Take care and I will update tomorrow after we get settled in his room following sclerosis.
Brooke

On The Road

Off to Columbus....

It seems like we have packed up the entire house and I think we are ready to hit the road. We found that it is hard to pack for such a long trip when we really don't know how long we will be gone. But it is even harder to pack clothes for a trip when we are between seasons.

We are leaving today and planning on driving to Louisville, KY to stay with Matt, our cousin. Greyson has doctors appointments on Tuesday morning for a meet and greet and ultrasound to plan the sclero.

Sclero will be Wednesday morning and we have been told Greyson will have to stay overnight in the hospital. Our friends, the Newland's are hosting us over the weekend. They live in Indianapolis and are planning to keep us busy for a few days. Then we we'll go back to Columbus and be ready for Greyson's surgery on Tuesday, October 11.

Through this journey we will send updates to let you know how Greyson is doing. Wish us luck on these hours in the car and everything else. Thanks for all your support.

Brooke, Michael, & Greyson